Weekly Updates! - October 24, 2025

Hello! I hope everyone has had a great week. I apologize for missing for a few weeks, I’ve had some family matters. However, I’m excited to be back in full swing!

I have a few updates this week:

• Upcoming event: TBRS Friends and Family Support Group – October 25, 2025

• • • This event will take place Saturday, October 25, 2025 at 3:00 PM Eastern Time via Zoom
      • Here is the link to join:
      • https://us02web.zoom.us/j/84555449715
    • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported.
    • Any parents or caregivers of someone diagnosed with TBRS are welcome.

• Tired of repeating your story? Now there’s an easier way.

• • AI Advocate (beta) puts your medical records and personalized answers in one secure place—helping you understand your care, spot what matters, and prepare for what’s next.
  • Families who try AI Advocate before Nov 30 will automatically be entered into Citizen Health’s $5,000 Caregiver Recharge Giveaway.
  • Sign-up takes about 5 minutes
    • Unfortunately, Citizen Health is currently only able to pull records for families in the United States, but are working towards other countries in the future.

• REMINDER: Registration is Open for the 2026 TBRS Super Summit!

• • • We’re excited to announce that registration is now open for the 2026 TBRS Super Summit!
      • This year’s event will take place March 19–22 at the beautiful Morgan’s Wonderland Camp in San Antonio, Texas.
    • The Summit is our biggest gathering of the year, bringing together families, researchers, and clinicians to connect, learn, and work toward the future of TBRS care and research. From expert-led sessions to hands-on activities, it’s a weekend filled with knowledge, support, and lasting friendships.
      • Both in-person and virtual options are available, so everyone can take part—whether you’re joining us at the camp or tuning in from home.
    • Save the dates:
      • Family arrival: Thursday, March 19
      • Scientist/Researcher arrival: Wednesday, March 18
    • Stay tuned for more details about the schedule and speakers. We can’t wait to see you there!
    • Click here for more information!

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Happy weekend!

Kit Church, CARE Manager